Snorting industrial cleaner; just say 'no!'
People always ask me “When did you have the accident?” which to me sounds as if I am 16, waif thin and obviously pregnant. Oh, you mean the wheelchair! There is no simple answer, but I often think of what was said to Winston Churchill, “I believe you are drunk...” no wait, I think it was another saying about a mystery wrapped in an enigma. So no, I am not paraplegic nor did I fall from a tree while stalking the Queen Mum. I have a heart/neuro degeneration thingy. This is uncommon. But then I am finding out that there are many “uncommon” medical paths. There is MS, ALS/NMD, Lupus, Lyme disease, Parkinson’s, Encephalitis, G-B Syndrome, Creutzfeldt-Jakob and PML. And these are just some of the neurological; there are dozens of ways to win the disability lotto, some temporary, some permanent. And it isn’t because you smoked or drank, or stopped too often to smell the roses; it just happens. That really frustrates doctors. Some of my many doctors are convinced that I did ‘something’, probably ‘something’ like snorting industrial cleaner, to end up like this.
Have we established that I am the “could be any woman” yet? That I was a walking Temporarily Able Bodied and didn’t even know it? I hope so, because medical talk is dull. What is interesting are all the incredible things people will simply come up and say or do if you are in a wheelchair. Like my first bus ride (actually my second as on the first one the driver refused to pick me up) when I, in wheelchair, am on one side of the bus, and a woman with Down’s Syndrome is on the other. She is going to work at the Red Cross, I am going home. A “caring” woman decides to talk to “the disabled” and does the slow, slightly loud “And how are you, dear? That’s nice dear!” which some people believe to be the universal language of disability. The woman with Down’s and I are both slightly vexed that “caring woman” cannot tell us apart. I am in a wheelchair, she isn’t. She has, as she slowly explains to “caring woman” both a job which makes money and a boyfriend (I have a girlfriend and my contribution most days is recycling carbon with my lungs). But “caring woman” doesn’t listen and goes on with the inane questions. So we ignore her and end up talking to each other. It is an easy conversation since she works at Red Cross which loans medical equipment and I have about 30% of their inventory in my apartment. Seriously, the Red Cross truck drivers wave to me as they drive by.
I’m not going to tell you all about what made me special as an able bodied person because those were the “before” values. Values of a society that I can’t meet anymore, and got quickly tired of trying to. Now, I try to get outside every day. I try to do some sort of exercise twice a week (currently that is wheelchair boxing). I work at not letting how well or bad or in pain I feel on any day or series of days determine my outlook. Still every month there are conversations with my partner Linda like this:
Me: “I’m cured! No really, I feel completely normal.”
Linda: “And how long have you been ‘cured?’”
Me: “Five hours.”
Linda: “I’m pretty sure you don’t want EVERY human to spontaneously combust.”
Me: “Yes I do, I hate them all!”
Linda: “You’re in pain, aren’t you?”
Me: “Pain! Do you know how many nerve connectors go to the spinal cord? One billion!”
Linda: “You want another pill?”
Me: “Know how I know...I’ve been counting them!”
Linda: “Take the pill.”
Every time I give those little snapshots of my life people email me wanting to tell Linda how much they admire her.
The other thing I do is try to understand or at least record the way in which I and society bump up into each other. Like how a lot of women are randomly getting all maternal on me. I have 21 year old girls asking “You okay, sweetheart?” This is pretty odd for someone who is over 6’3”, has an athletic build and has been more used to short men coming up and asking me to spank or dominate them. So no, I’m not exactly ‘delicate.’ But when women ten years younger and half my size want to stroke my hand....I say YES and I don’t tell Linda but I’m still confused. And let’s not get into the women five to ten years older than me who hold me and say I remind them of their daughter. That’s a compliment right, I think?
I shouldn’t forget mentioning the benefits. As I said today to the woman painting the henna tattoo on my body, “The old rules don’t apply.” There is nothing like traumatic life-altering medical problems to help demolish that mental 12 volume set of “What Good Girls Do.” Are all girls who wear thong underwear really tramps? Let’s order some and find out. A lot of my social concerns disappeared once I had something nastier to fear. I dress goth now, or wheelchair goth (always thought it was cool, always too scared to try). My female physiotherapist calls it “prostitute wear” after I showed up in a miniskirt asking her to alter my wheelchair footplate for high heeled knee-high boots with buckles (PVC boots). But hey, she was the one who told me it was “impossible” to wear a miniskirt in a wheelchair. That’s a challenge, right? Besides, her 19 year old daughter comes to me for fashion tips. People will try and tell you that “Junior miss” sizes are not for wheelchair women in their 30’s. I disagree; my clothes come from Sweet and Toxic, Morbid Threads, Slash N’ Burn, Arsenic, Lily and Remains, Trick Fairy, Kill City, Darque, and Demonia. Plus I have a vampire teddy bear in his own mini velvet-lined coffin. Cool, huh? Remember: the old rules don’t apply.
So that’s it; the quick 101 on Elizabeth McClung, disability blogger. I hope you weren’t looking for dignity or sensitive insight. Good.
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